I’m stepping into this a little bit late–like 16 days into November late–but I only just learned of the #ChronicallyGrateful Challenge a few days ago. My Twitter friends Molly Shreiber(@mollyschreiber, http://www.atjax.wordpress.com and Alan Brewington (@abrewi3010, http://www.paintalks.com) have been tweeting and/or posting their answers to the challenge daily–and they’ve been totally wonderful. Do take a look.
So, here’s my answer to Day 16’s challenge: On a bad day, what is a way to redirect yourself to a more positive place?
Well, if you’ve been reading RheumaBlog or following me on Twitter for very long, you already know my answer: I look for the Gifts. Which means, basically, being mindful–being present in this moment right now–and noticing the beauties, both small and large, that the world offers us for free each and every day and each and every moment.
Today my hands are stiff and achey–that deep, sick ache inside the joints that almost feels like both hands are nauseous. This pain won’t keep me from writing or painting, or from doing the things I need to do today. After so many years of coping with rheumatoid disease, I can keep on with my life in spite of this kind of naggy pain. But it does affect my overall mood. This kind of pain can make me feel subtly blue. It can sap my energy–my spoons–and make me listless and distracted. It can make me feel glum.
So here are some examples of the Gifts that can easily redirect me to a more “positive place:”
Submerging my sore hands and wrists in a sink of warm/hot water. The sensation is instantly and profoundly soothing, and it makes me sigh and smile. After a few minutes of slowly flexing my hands within that warmth, I feel better in my head, even if my hands still hurt. I know that I can revisit this small therapy–this Gift–anytime; it only takes five minutes or so. Knowing that is soothing, too.
Taking a walk. It doesn’t have to be a long one. Even five or ten minutes is enough. This kind of walk isn’t really for exercise (though it can turn into that, sometimes, which is another Gift). Instead, this is a Watchful Walk. I walk slowly, breathing deep and looking–really looking–at the world around me. The Gifts emerge: a neighbor’s beautifully tended garden; two squirrels chasing each other and playing in the old Valley oak tree; a quick flight of six flashy, black-and-white magpies, cackling as they go.
Doing something nice or helpful for someone else. For me, most often this is for my mother, who I live with and care for. She’s often cold–especially now that the crisp, cool air of autumn has finally arrived here in Northern California. Last night, she was curled up on the sofa with a light throw over her, her legs and arms all drawn in close to her body. She was obviously chilled and uncomfortable, so I got her one of the nice, thick, warm, doubled-fleece throws the neighbor kids made for us a couple of Christmases back. Mom was delighted: cuddling into the throw conjured a happy memory–and she was instantly warmer at the same time. Doing this small thing for her took my mind off my painful hip last night and redirected my thoughts onto a pure positive. It was a win for both of us.
These are just a few of the Gifts I look for, sometimes on purpose (as with the hot water, or by taking a walk) and sometimes by habit (helping Mom warm up). Each of them is an act of positive redirection that puts my mind and heart in a better place. The Gifts are especially precious on bad days, but I treasure them–and cultivate them–every day.
I’m attending the Joint Decisions Empowerment Summit in early November. This year it’s being held in Sausalito, California alongside the American College of Rheumatology Conference taking place in San Francisco at the same time.
Sponsored by Creaky Joints and Janssen Biotech, the summit is an amazing gathering of the most inspiring, creative, caring, informed, and influential patient bloggers/advocates in the nation. I feel incredibly honored (and humbled) to be included among them. Each one of us, like you, lives every day of our lives with one or more (!!) autoimmune rheumatic diseases, including rheumatoid disease, lupus, psoriatic arthritis, and ankylosing spondylitis.
This year, I’m also participating as a panel member in a Creaky Joints virtual web seminar–a webinar–during the summit on Saturday, Nov. 7 at 8 p.m. EST. The subject: “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.” If you’d like to be part of it–and it promises to be chock full of valuable information–please register here.
An open, honest give-and-take between doctor and patient is something I believe is absolutely vital to any sort of success in treating not only disease, but the whole
patient–the whole human being. After all, rheumatic diseases do affect our everything, from getting out of bed in the morning, to caring for kids, to working and playing, to our relationships both intimate and otherwise. And I believe communication is an area in which both patients and doctors need a lot of help.
To that end, I’d like to pose some questions to all of you. Your answers will help us make the webinar both educational and–more importantly–useful and empowering to all of us.
So, without further ado (I love that word!), here are my questions:
Your rheumatologist walks into the exam room and says, “how are you feeling?” Well, I don’t know about you, but “pretty good” or “fine, thanks,” pops out of my mouth automatically, even when I’m in pain. I’m so used to hiding how I really feel from others, it’s hard for me to be truthful even with my doctor. What might be a better way for the doctor to phrase that question? What could they say that would prompt you to share how you really feel?
What’s your relationship with your rheumatologist like? What’s helped or hindered it?
Does your rheumatologist include you in their decision-making process regarding treatment? When you make your own decisions/changes, such as stopping meds or changing/adding diet, exercise, or supplements, do you share them with your doctor? Why or why not?
What physical and/or emotional barriers to your health and well-being do you face? How do you address them? What’s worked for you?
Your answers will be anonymous and enormously helpful. I can’t thank you enough for taking a few minutes to answer them in as much–or as little–detail as you choose.
I write RheumaBlog, articles and posts about RD for RheumatoidArthritis.net and other health websites, and I tweet about RD on Twitter because I want to connect with others who also have this difficult and frustrating disease. For many, many years I felt totally alone with it. Finally being able to meet and interact with others, even if only virtually, was and continues to be a balm to my soul and a light in my heart.
But more importantly, I write and tweet because I want to help others who may not have as much experience in coping with this disease as I do. I clearly remember being a rheumatoid disease newbie. I didn’t know anything about it or what to ask my doctor. I coped with dreadful, disabling pain even as I worked full time, did a great job at being a parent to my daughter and a wife to my husband, took care of our home and all the chores associated with that, wrote and made art, and tried my best to be a social person, as well. It was tremendously hard, and I did it without having anyone who really understood the pain, fatigue, and fear the disease could cause to talk to.
But with the Internet and social media, that’s all changed. It doesn’t have to be that way anymore–we don’t have to spend our lives isolated inside this disease. Do, please, take a couple of minutes to think about and answer the questions I’ve asked above. Your answers may help someone else cope better with their RD and may give them hope and calm their fears. Consider taking part in the webinar on Nov. 7. And always, always feel free to reach out to me here on RheumaBlog, or on Twitter ( I’m @RheumaBlog_Wren), or via email: email@example.com.
The big nurse with the soul patch, great sense of humor, and easy, friendly smile zoomed me and my wheelchair down the hall with purpose. Trotting alongside us was a tired-looking primary care intern. She was holding a compact machine with small, blinking lights; the wires sprouting from it connected to the chilly little conductive dots they’d stuck all over my bare chest a few minutes before …
Well, I’m three whole days late for RA Blog Week. Unfortunately, life has simply gotten in the way of writing anything that can’t be classified as actual “work.” I hate that, as I love to write. I particularly love to write posts and articles I hope will be helpful to others who have rheumatoid disease (arthritis), whether they’re RD veterans or newbies.
So, without further ado or procrastination, I’ll get started. Today is Day 4 of RA Blog Week. The prompt is: Five things I have learned – write about the five things you have learned about yourself, or RA.
Oh, over the 28 years I’ve had this disease, I’ve learned. I’ve learned a lot.
First of the Five: I Never Dreamed I Was This Strong. Starting about six months before I was diagnosed, I experienced increasingly painful and disabling flares. They didn’t stick to one place. Instead one flare would be in the knuckles of one of my hands; the next in one of my knees, the next in a shoulder. All of themlasted from two to four days. Sometimes there was a stretch of time between them–a day, or a week–sometimes, there wasn’t. The intensity of each flare varied. They were completely unpredictable.
And yet I continued to manage all the duties and responsibilities of being a wife and mother, including the housework, the grocery shopping, playing with my daughter, and participating in family outings. I also worked full time at a job that frequently required me to be on my feet and moving. When I wasn’t doing that, I was at my desk, writing and typing the articles I’d just gathered the information for.
I did it all with–and in spite of–those awful RD flares. There were times, of course, when one would strike a joint that would prevent me from walking, typing, or moving, and I’d have to call in sick. I hated to do that, though, and to make up for it, I worked longer hours during days I was more able. I never once missed a deadline or let anyone down, and because of that, my boss and co-workers kindly excused my absences. At home, I still did most things, most of the time, but once in a while I needed help from my husband. I hated that, too, though, and I didn’t give myself permission for that very often.
I look back at that time and wonder how in the world I did it. Since then, my disease has changed, become somewhat milder though just as constant. I have, indeed, learned how strong I can be when I must–but I’ve also learned that there’s no shame in asking for help. This disease is serious. When you’re in pain, fighting severe fatigue, and feeling like bloody hell, you don’t have to be a hero, even if you can be one if you have to. Give yourself a break. Rest. You’ll feel better overall if you do. And the chances for burnout–depression–are less that way.
Second of the Five: I Never Dreamed I Was This Weak. The flares my rheumatoid disease sometimes causes can knock me down for the count, making it impossible for me to do much of anything but whimper and wait for them to end. When this happens I feel incredibly weak and useless. If I were a Neanderthal, my tribe would abandon me to die, alone in the elements.
Good thing I’m not a Neanderthal. But I’d be lying if I sometimes didn’t feel like I ought to be abandoned to my fate. Like anyone else, I like being a useful, productive member of my family, my community, and my society. I feel uncomfortable when I can’t. I was raised to feel guilty if I sat around doing nothing, and even today, decades past childhood, that training remains ingrained in my very being.
I’ve learned, though, that resting and allowing the RD flare to follow its course has nothing to do with being lazy or weak, no matter how much my brain may tell me otherwise. Instead, resting helps my immune system calm itself down and, if I’m lucky, call off its erroneous inflammatory attack on my poor synovial joints and other soft tissues earlier than it might otherwise.
“Weakness” can refer to a physical state or a mental one. RD can affect our physical bodies tremendously, but in most cases, we’re strong enough to keep going anyway, even when it’s smarter not to. The mental side of weakness is, I believe, an artificial construct of our culture, which expects us to be strong–physically and mentally–no matter what. It rarely accepts excuses. But this is terribly harmful to all of us, whether we have RD or not. When we’re ill, we can’t heal or regain our physical strength without rest and recuperation. It’s silly and cruel expect otherwise.
I never dreamed I could be this weak–or, as I wrote above, that I could be this strong.
Third of the Five: Always, Always Look for the Gifts. One day, a year or so after diagnosis, I was outside walking our dog, Max. My left ankle was flared, so doing this was incredibly painful, and I was feeling particularly low about myself and the world that day. Behind our flat was in was a long expanse of shaggy lawn, bordered by an old, very thick and high hedge that was always filled with birds. It also harbored hedgehogs. I loved this area–and so did Max. While he was doing his business and my ankle throbbed with ugly, angry intensity, I looked down and noticed a large, brown mushroom near my foot. There was another one five or six inches away from it. Suddenly, I remembered reading about “fairy rings” as a child, those strange and wonderful circles of mushrooms that bordered the places where fairies held their nightly celebrations, dancing and singing and making merry before the sun rose and they went back to that other, mystical dimension in which they lived most of the time. Could this be one of those magical rings? Well, of course not. That was just a silly fantasy for children.
I looked harder. Yes, there was a third mushroom, and a fourth… and a fifth, sixth, and seventh. To my utter astonishment and delight, I’d discovered a fairy ring–the real, living growth of mushrooms that gave rise to the fantastical myth long ago. Gazing at it, I could imagine tiny fairies dancing within it, leaping and twirling in exuberant exhilaration, laughing and talking, each of them dressed in beautiful clothing made of leaves and flowers…
Max tugged at the leash, vanishing my daydream in an instant. But my mood had changed–perhaps, forever. This, I thought as I slowly limped back to the front of the building with him, and then, even more slowly up the three long flights of stairs to the door of our flat, was a Gift. It was so ordinary and simple, but so extraordinarily beautiful, that it was Huge. From that day on I’ve looked for the Gifts life offers us every single day, even if it’s as simple as a flower growing in a crack in the parking lot asphalt. Why? They fill me with wonder and awe, or maybe they make me smile or laugh. The best thing is they make me forget–even if it’s just for a few minutes or even a few moments–my pain, my cares, and my worries. These Gifts are always there for us, free and clear, no matter where we live or what we do. We only have to open our eyes and see them.
Fourth of the Five: Yes, I Can Give Myself a Shot. A year ago, my rheumatologist and I agreed that the cocktail of disease-modifying anti-rheumatic drugs (DMARDs) I’d been taking for several years was no longer working to keep my RD under adequate control. He prescribed a biologic that had to be given as an injection once every two weeks–and I’d have to do it myself, at home.
Now, I’ve gotten used to needles over my years of living with this disease. There are frequent blood draws, and occasional injections into joints and other parts of my anatomy. I therefore thought I was tough. But when I thought about sticking myself with a hypodermic needle, all I could do was shrink and cringe. It was one thing
having a nurse or technician wield the sharp things, but quite another to do it myself, to myself.
Well, fortunately the drug my doctor prescribed comes in an auto-injector, a tube-shaped mechanism that drives the tiny needle into the skin and injects the medicine automatically. The best part? To do it, you just press a button–and you can’t see the injection at all, since it’s hidden within the tube that’s pressed against the injection site.
Sure, the first couple of jabs were kind of scary. But it didn’t take many more before I felt pretty comfortable with the whole process. Since that drug didn’t work, I’ve since changed to another one. It, too, requires self-injection, except now it’s once a week instead of twice a month. No problemo! I just do it now without thinking too hard about it.
Someday, I might have to inject myself with a bona-fide hypodermic syringe. While I’m not looking forward to that, and in fact, I’m hoping I never have to, I know I can do it if I must. Having RD has helped me learn a lot of things about myself–even that I can face the thought of jabbing myself with needles, especially if they’re going to make me feel better and slow the progression of the disease.
Fifth of the Five: I Can–and Should–Share What I’ve Learned. I’ve learned many more things about RD and about myself over the years. Much of what I’ve learned about the disease, I’ve learned because of the Internet, and most of it after 2005. It opened my eyes and my mind, and I’m so, so grateful for the education. Now I know why this disease does what it does. I know what’s going on in my body when my joints flare. I know that it can affect other soft tissues in my body, as well, including my tendons and ligaments, the bursae, and organs like my heart and vascular system. Knowledge, they say, is power. I believe that. I’ve become much, much stronger since I started studying the disease that’s dominated so much of my life since my early 30s.
I’m not going to go into the many things I’ve learned about myself since I was diagnosed. I’ve written about a myriad of them here in RheumaBlog, and you’re welcome to read about them if you wish. But the biggest realization has been that I have an obligation to pass on and share what I’ve learned to others. I remember so clearly how bewildered I was when I was given my diagnosis. I remember how fearful I felt when the flares were horrible, and how totally demoralized I’d get because my feet hurt so bad every single day, whether another joint flared or not. There wasn’t much information available to the layperson about the disease back then, so I struggled on in ignorance. What I would have given to know what I know today.
So I try to share it as best as I can, now. This last, fifth Thing I’ve Learned may just be the most important lesson of all.
I hope you’ll check out the many posts my fellow RD bloggers–more than 40 of them!– have written for the most excellent RA Blog Week, hosted by His Cheeriness, Rick Phillips. Most of them actually started on Day 1, and every one of them is so worth your time. You can never learn too much about rheumatoid disease–or yourself.
Wishing you the very best as your day goes on. Don’t forget to look for the gifts, OK?
My sister, who lives in Santa Fe, NM, has been here for the last 10 days visiting Mom and I. We grabbed our aunt last week and the four of us headed for Monterey and Carmel-by-the-Sea again. We had a wonderful time visiting the Montery Bay Aquarium (fabulous, incredible place well worth visiting if you’ve never been there!) and eating some lovely meals out. But Mom woke up quite sick Friday morning, so we came on home. It turned out she had a urinary tract infection, a common ailment in the elderly. After a tough four days, and trying two different antibiotics, she’s finally on the mend. Seeing her today, all bright-eyed and bouncy, you’d never know she’d been sick enough to end up in an ambulance on her way to the local ER.
I’m a little bummed, now. I just took my sister back to the airport. I love it when we get together and wish we could do it more often. She’s such fun to have around! We spend most of our time laughing. :)
I sent her home with this:
A couple of nights ago I tried my hand at scribble-interpretation for a Twitter group for illustrators. The talented illustrator who created #3yroldscribble has her 3-year-old son draw a scribble each week, which she then posts on Twitter. The challenge is to “see” something in the scribble, illustrate it, and post it back to Twitter, including the hashtag #3yroldscribble.
So, I went ahead an interpreted and art-ed my little heart out. I posted it on Twitter last night, the very first time I’ve posted something to an art group on social media. Fun! I’m looking forward to comments from the other illustrators, most (if not all) of whom are far more experienced than I.
Here it is:
My rheumatoid disease intruded frequently during our travels and didn’t let up much after we got home. It ached and throbbed in my hands and feet, but also showed up as sharp, intense, but brief pains in my right groin as I walked. That’s arthritis in the hip–oh, joy–a problem I haven’t had for a very long time. I ended up having to find a CVS where I could buy a cane (I’d left my old one at home, not expecting to need it). The new cane helped a lot.
Today, I’m still fighting my hands and feet. It gets old, doesn’t it. Tomorrow I’m finally seeing my new rheumatologist; I’m hoping to convince him to switch me to another biologic. At nearly five months, Enbrel still isn’t working and my RD is steadily worsening. With luck, my new doc will agree. If not, I guess I’ll have to finish the full six-month trial. Sigh.
But hey, it’s all good. Today the new drafting chair I ordered arrived. I’ll delighted with it. Unfortunately, the first chair I bought for my drawing table wasn’t quite tall enough, forcing me to put a pillow under my backside, hoping to sit up a little higher. It didn’t work very well, and I finally had to admit defeat. So–a new chair. It’s perfect!
Here’s wishing everyone a fun and relaxing Labor Day weekend. I’m ready for some autumn weather and colors, aren’t you? Thanks for reading!
Until recently, I wasn’t much of a napper. There was always too much life to live and too much to do. I didn’t want to waste any time sleeping during the day, even when my rheumatoid disease gave me a lot of pain.
I lived for my first 14 years with RD blaming my near constant, bone-deep fatigue on being in pain, on being busy, and on poor sleep. Fourteen years of feeling guilty if I took a nap. Imagine my surprise when I learned, after having RD for roughly 20 years, that one of its major symptoms is fatigue. That it hits no matter how well you’ve slept, and regardless of your pain level…
Hi, all. I’m a bit late in posting this (I’m blaming RD brain fog because it’s the only excuse I have) but figure better late than sorry. No early bird jokes, please. ;)
If you’re the Twittering type, check out this Joint Decisions/Creaky Joints Twitter Chat tomorrow. RA Guy and the folks from Arthritis Introspective will be there to discuss the real mental and emotional aspects of living with rheumatoid disease, so there’s sure to be a lot of good information fluttering around:
Stop in, learn, ask questions, and make yourself heard in real time with real people who care.
Oh, I’ve neglected poor RheumaBlog, and you, for so long! I wish I could say it was because I was out galavanting, exploring the world, and having adventures, but it’s nothing as exciting as that.
Instead, I’ve been right here at home. Which doesn’t mean I’ve spent all my time sitting around on my hiney–no, I’ve had Things To Do. I’ve also been coping almost daily with more RD pain than I’ve had in years.
As has been my old rheuma-dragon’s wont, the trouble has been mainly with my hands and wrists, though he’s been nipping and gnawing at my feet now and then, too. A couple of times, he’s tried out my knees, and one unhappy time he chomped
into my left shoulder (always his fave, for some reason).
The pain the dragon inflicts is truly unpleasant. Fortunately, the worst attacks have been short, lasting only for a day or so. But the Neverending Flare–the background pain that never stops–has slowly increased in intensity so that my hands, or feet, or both, are always in distress. As we all do, I try my best to ignore them, but it’s gotten a lot harder to do. I find myself taking more pain medication than I want to.
And, though I’ve jabbed myself once a week with my latest miracle drug, Enbrel, for almost four months now, the only change has been for the worse. I have an appointment with a new rheumatologist the first week in September (my old,
dearly-loved rheumy up and moved to the other end of the country), so we’ll see what he has to say. I corresponded by email with my old doc just before he left, and I asked about the possibility of trying a new biologic. He said to be patient: the VA requires a six-month trial before any new med will be approved. So, even though I’ll be seeing the new rheumy, I know nothing will change until at least the end of October.
This is frustrating. I know I’m singing to the choir, but waiting for meds to work has to be, after enduring sometimes awful pain, the worst part of this disease. We hear how wonderful these new biological drugs are, and about how many people like us have had their disease slowed drastically and their symptoms all but relieved by them. And yet, for some of us, nothing happens.
I started Humira a year ago October after deciding, with my rheumy, that my symptoms were steadily worsening in spite of the three-DMARD cocktail I’ve taken
for the last four years. So, in addition to them, I took Humira for six months. It didn’t have any effect. That trial finished, the VA approved Enbrel. And of course, it hasn’t worked so far, either. My rheumy said not to lose hope–it can take six months for these drugs to work. But I’m sorry, I’ve lost hope anyway. At the same
time I’ve taken these powerful but useless drugs, my RD symptoms have steadily worsened. Along with the constant pain, I’m now also dealing with frequent debilitating fatigue, a symptom I had little trouble with in the past.
But enough complaining. In spite of the dragon, I’ve been doing a great deal of writing for RheumatoidArthritis.net. Please go check it out. My posts are archived
there, of course, but there are a great crew of other talented writers to sample, as well. All of them have rheumatoid disease at various stages and intensities. I’ve never seen so much good, solid information wrapped up in excellent storytelling anywhere before. It’s well worth your time.
And yes, I’ve been playing with art. I love my new table, chair, and task lamp. I’m starting small and slowly relearning old skills, but I’m really enjoying it. And I’ve been exploring the art and creativity of other artists, many of them published professional illustrators, online. Illustration is the corner of the art world I’m most interested in and have the most natural affinity for. So the more I can learn, the better.
I’ve scattered some samples of what I’ve been doing around this post. I hope you’re enjoying looking at them as much as I did making them.
Finally, Mom has been up and down, heath-wise. Nothing serious, but it’s hard to say from day to day how she’ll feel, so I have to be prepared all the time to stop everything else to take care of her. And, the time is coming, soon, when she’ll have to quit driving. She’s become very impatient in traffic, and her memory is beginning to fail her. I worry about her when she drives, but I know how hard it will be for her to lose that last bit of independence. It’s heartbreaking.
Anyway, once she stops driving for good, I’ll be her full-time chauffeur. With my RD being so ugly these days, I worry about that. Another reason I wish these danged wonder drugs would just go ahead and be wonderful!
So. That’s what’s been keeping me busy and away from this blog. I hope you’ll all forgive me for being away for so long. I’ll try to do better in future.
When I started putting my new drawing table together on Saturday, I discovered that it would require screwing in about a thousand screws. My hands just aren’t up to that, unfortunately. So, after a bit of thought, I decided to head to the hardware store to buy myself (hopefully) an inexpensive electric screwdriver.
An hour or so later, I had one. Made by Black & Decker, and only $20! Yay! I headed home, opened the box my new tool was in, and came to yet another dead stop. It had to be charged for at least 16 hours before use. So, shaking my head, I plugged it in and put off building the new table until Sunday. Disappointing, really.
Sunday, mid-morning, arrived. After reading all the directions, it was clear I was going to need some help, even though I had a magic electric screwdriver. Along with screws, there were Alan wrenches involved, and of course, balancing one piece on or next to another other for joining by screws and Alan thingies. So I enlisted Mom. To my surprise, she was happy to help!
And so, two hours later, after much discussion, a little arguing, occasional grunting, much laughter, a few cries of dismay, and finally, an exhausted high-five, we were done. My drawing table was ready to use!
I cleaned up the construction mess, unboxed the task lamp, and attached it to the table. Both are “vintage” styles, and they look great together. Then I laid out my art things and a work-in-progress that I’d had to stop working on when we moved back in September, and as a final touch, put my Laughing Buddha at the top of the table, overlooking everything. Gazing at it made me smile. There were other chores to take care of Sunday, though, so no opportunity to use it all, yet. But Sunday night I went to bed a sore but happy camper.
Today, I had a writing assignment to complete, but tomorrow I’m planning to give the whole day over to art.
My hands are flaring painfully as I write this, and I’ve been alternately icing and heating a flared left shoulder. Still, I’m hoping for a restful night’s sleep tonight, and a mild-pain day tomorrow.
I took a big step forward this week. For some time now I’ve yearned to start drawing and painting again. The talent I was born with is still with me, but it’s been decades since I’ve created anything beyond the occasional doodle. Since moving to our new apartment back in September of last year, I’ve been slowly collecting art supplies: paper, paints, colored pencils, drawing pens in the hope that I could start exercising my art muscles again, practicing and burnishing old skills, and preparing myself to learn new ones.
But until recently, I’ve had no space to spread these things out where I could work on something off and on as time and my rheuma-hands permit. Creating art does take time, and the creative urge (at least for me) is easily squashed when I’m forced to get all my supplies out and then put them all away again an hour or two later every time I want to work on something. For me, art is a spontaneous undertaking: the muse beckons or time and inclination merge, and I need to get to work. Right then, not later, not after having to set the space up yet again. Not being able to do this was frustrating.
But now, I have a Room Of My Own (ROMO). For the first several months after Mom and I moved, we had to use the big third room in our new apartment to store all of mom’s excess stuff. But that’s all now in storage elsewhere. So, after saving my pennies for a while, and comparing prices all over the place, I finally took the plunge. OnTuesday this week I ordered and paid for a beautiful, vintage-style drawing table, a sturdy, ergonomic adjustable chair, and a good task light.
UPS is delivering them today. To say that I’m excited is an understatement. It’s been too, too many years since I’ve been able to have my art supplies out where I can work on my art whenever I have the time and the urge.
Of course, the rheuma-dragon is being particularly unkind these days. He’s taken to concentrating most of his fury on my wrists, hands, and fingers, and I sort of need those to make art. But I figure I’ll just take it slow. Do what I can, rest, pace myself. Make the whole process more contemplative, and use it as a distraction from pain and frustration.
When my new “studio” is put together, I’ll post a photo.
For me, the decision to buy these artistic tools cements my determination to be visually creative again, something I can add to my writing as a way to express myself and help me cope with life’s stresses and the particular anxieties that having rheumatoid disease causes. I’m now a step closer to making that happen.